October 9, 2017

Two Months Ago

We were celebrating my sister's birthday a day early. She'd be working the actual day of, which she shares with my dad on August 9. I got the family together and we went to Shake Shack at the District for dinner. Afterwards, we headed back to my house to continue the celebration with cupcakes. Shortly, after we returned, my phone was buzzing. I had missed a call from my aunt that lives in Chicago. It was highly unusual for her to call, especially this late, as it was nearly 9PM PST. I immediately called back, my uncle answered - it is here, when my world begins to blur. Even, now, weeks later, it remains unclear.

My dad was found on the floor of his condo unconscious by his youngest of three sisters. She had went over to tell him that the family would be celebrating his birthday the next day at Bartolini's. It's a favorite of my dad's, they have delicious calzones. My dad doesn't have a home phone (he stopped paying the bill years ago). Not a big surprise, he never did like the telephone. Amy gave him a cell a couple years back that he'll turn on for special occasions. The only sure way to get a hold of my dad was to go to his house. He'd appear after a few taps on the window. However, this night, he did not. Even though his car was home. My aunt knew something was wrong and had the neighbor let her in. An ambulance was called immediately. He has had no insurance since he was laid off from his job in 2016, where he worked for 40 years. Without insurance, there was no choice in hospitals. He was brought to the hospital Mike and Amy were both born in. The hospital has since been renamed and had a shift in management after bankruptcy a few years back. I actually thought it closed completely, but I digress. My aunt left my dad's condo, and met my aunt and uncle at the emergency room. After a CT scan and preliminary tests they determined my dad was in renal failure and severely dehydrated. He was too weak for further testing so they weren't able to determine more. They moved him to ICU, my aunts (and uncle) left when they had him situated in a room.

After I hung up with my uncle. I had to explain the little I knew to my brother and sister. At least, we were all together. We immediately began searching for flights. Spirit had a red eye that left in two hours. We quickly decided to book Amy and I on that flight. Mike had just visited days earlier so he stayed behind to help with the kids. We quickly packed and made it to the airport with minimal time to spare. We opted for Starbucks at the gate rather than a beer, though, the latter was tempting. We were on edge. It wasn't that long ago we were left helpless traveling between hospitals in Pahrump and Las Vegas the day my mom died. And, when Frank's dad passed away, he died when I was mid-air. I was terrified my dad wouldn't make it through the night, and if he did, I was nervous about his condition. All I could do was replay the last time I saw him over and over again in my mind...

It was three week prior, I reluctantly dropped him off at the airport. He didn't want to go, but he insisted he had bills to pay. But he'd tend to his responsibilities and then return to us (in Las Vegas) long term. He asked that I mail him driving directions from his house to mine. I had printed them out and mailed them the very next day. I hadn't talked to him since, but planned to on his birthday - since his phone would be on, special occasion and all.

We didn't get a wink of sleep on the flight. We flew into O'Hare, I rented a car and then we drove to the south side. Thankfully, we were driving against the morning commuter traffic. Though, I was cursing the coin only tollbooth immediately outside the airport that forced me to activate the $15/day fee for the convenience of using the I-Pass. Such a racket!

Anyhow, we arrived at the ICU and we found my dad's room. He did not look well, but he was breathing... on his own. The nurse met with us to clarify medical history and update us on his status. Unfortunately, they hadn't learned much. He really needed an MRI, but he wasn't stable to perform the test. The CT Scan showed he had clear lungs. Amazing since he's been a lifelong smoker. But his organs did show signs of a possible metastatic cancer. His lab work showed excessively high levels of calcium. There was no sign of alcohol in his system, which indicated to me that he had been unconscious for a couple days. My dad was never without a beer or smoke for long. He was unresponsive with us at his side, his breathing was shallow, but otherwise he was fairly calm. I honestly thought he was sedated. When I learned he was not, I knew how dire the situation was. We were left helpless until the doctor showed to make his rounds.

My fears were validated when speaking to the doctor. Dialysis was the only treatment that could be started, but in order to do so, we'd have to agree to intubation. We knew this would be against my dad's wishes. Further, he hasn't been treated by a doctor in nearly 20 years, which would mean that dialysis would provide no quality of life he'd consider worth living. Even if we could reverse the renal failure, we still had the likelihood of terminal cancer to contend with. There was no winning this battle.

The silver lining of the loss of my mom is that it provided me the life experience of death. They teach us all about life in school, but they never mention death. It would be nice if death wasn't so taboo. After all, none of us are getting out alive. If you remove the emotion from death, the process of dying is rather fascinating. It's unfortunate that for most of us, we haven't a clue what to expect until we witness a loved one die. I was able to apply all that I learned two short years ago and be better prepared and more aware this time around. Starting with pain medication and followed by a DNR. Pain was all my dad responded to - talk about heart wrenching. My focus was to keep him comfortable, and alive. I could not have him die on his 61st and my sister's 28th birthday. It just wasn't fair for life to be that cruel.

Refusing dialysis meant that my dad would be moved from the ICU and placed into a patient room until hospice took over. A social worker provided pamphlets and we were given a couple hours to choose a facility, without insurance, we were given two self pay options: the first was that I could pay out of pocket and the second was that I could lien my dad's condo. Neither were acceptable. Without income, I was convinced he could apply for Medicaid. The social worker provided no assistance in applying. We took it upon ourselves. HIPPA laws made it extremely difficult. As I continuously reached dead end after dead end, I started to seek hospices that accepted charitable cases and/or medicaid. The pool of options was quite small. I jumped through hoops. Amy even left his side to obtain financials from his home. It crushes me that we were dealing with all of this during my dad's final days.

The day after my dad was moved from the ICU I requested bloodwork to check his kidney function. There was no improvement - the kidney specialist signed off on his care. The hospital kept pushing hospice. I refused to bankrupt myself or my dad by going the self pay route. He did not devote 40 years of his life to work to have it all vanish for what would likely be minutes, hours, but certainly no more than days of hospice. I had to find another way or at least exhaust all other options. All I wanted was for him to be as comfortable as possible and pass peacefully. The hospital staff kept discussing his discharge plan and spoke of moving him to a hospice facility or back to his home. I couldn't understand why they didn't see what I saw. He wasn't fit to be moved. I felt he would die in transit. He had already spent hours, or likely, days alone on the floor of his home. We were not leaving his side.

Mike flew out a day behind us, I had him fly into Midway since I was deliriously tired (having been up for 40 hours straight or something equally as ridiculous) and figured I'd be safer to drive on the abandoned Cicero Ave in the wee hours of the morning. We stopped at White Castle, he was hungry and I was parched. I paid a premium for my diet Coke thanks to the Cook County Sugar Tax (one cent/per ounce). I think it was there Mike and I started our running joke that, "if you want it sugar coated, it'll cost extra."

Another day and night went by with family visiting. The hospital urging for hospice, me fighting for medicaid and that night we had the first nurse that treated us like humans. She was the only one that extended compassion and kindness to us. She happened to manage the floor, so I voiced my complaints that had been otherwise ignored. She saw that the staff followed through, she also took pity on us and brought blankets and a reclining chair. Our encounter with her shifted things; our day nurse was also kind and helpful. Soon, we had water and a second recliner. Our needs paled in comparison to my dad's so we didn't ask for anything, but I was taken aback by how we were ignored. In all of the hospital stays with my mom, the staff always offered water, blankets, etc. I really thought it was just vastly different because everyone was so cold to us.

The kindness came when we needed it most since dad was showing signs that death was near. He opened his eyes and had brief lucidity allowing him to make eye contact and respond to sound. This stirred up hope, but I knew coupled with his change of color and coolness to his extremities - the end was near. Just as I suspected, his condition worsened. A fever followed and later broke, it came as surprise that he was still breathing at day break. I thought he'd surely pass overnight. When my brother and sister woke, I had to share my fear I'd been dwelling on. I worried that dad wouldn't let go with us hovering. He never was one to complain or admit discomfort. He'd always retire to bed without a word or leave without farewell. I felt our presence was prolonging the inevitable. We decided to have a final moment and then take a walk outside to let him be. I was just sick over it, but it felt selfish to stay.

We returned to the room with a pit in our stomachs. He was just as we left him fighting for each breath. It was all so much, Mike decided to go for a longer walk. Amy and I stayed by dad's side. Mike returned with tacos. An odd find at 9:30AM but we were happy to have it. Mid-taco, his nurse entered the room for vitals. Thus far, I had observed her to be clumsy and sluggish. I didn't pay her much attention when she fidgeted with faulty machines, I just kept a watchful eye over my dad to be sure she didn't cause discomfort. As she made her next attempt at vitals, a new doctor entered as he made his rounds. We were distracted by him. Again, he was pushing for hospice, but at this point, the ball was in the hospital's court. Since they didn't get back to me on Friday, we were left in limbo over the weekend. While I was arguing with him over transferring to hospice, the nurse continued to fidget with the machine. My sister looked over and shouted "you can't get a reading because he stopped breathing." I dead pan stared at the doctor in complete frustation and threw my hands in the air "I guess it's not an issue now, isn't it?" I raced to my dad's side. That was it. Three days after his 61st birthday he was gone. My dad probably had enough (he was never one for fuss) and saw the opportunity to slip out. Proving he was a master at the Irish Goodbye.

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